The Mother-Mental-Lode

I keep coming across the “mental load” concept via blog posts and social media. Have you seen it?  It is about the overload of mindshare that Moms bear in order to keep their family’s lives aligned. It is very spot-on for many Moms. It is true, Mom’s live on a hamster wheel and they are pretty amazing. And as a society, we could all certainly do with partners sharing more of that burden. But every time I read about it I can’t help but think not only of all the single Moms out there, but even moreso of the Moms of non-neuro typical kids. And the contrast of what is described as the common mental load is pretty much comical because it is such a severe understatement for Moms of non-neuro typical children.

In some of the Social Media groups for parents of non-neurotypical kids, the Moms are trying to figure out how to quit their jobs or reduce their hours to lighten the load. Which they can’t afford because of all the extra expenditures necessary to support their child. Many of these parents are desperate to unlock the mysterious secrets of their puzzling child, and if they have – they are just as desperate to then maintain the precious balance they’ve found as the child grows. They are unable to tell you just how much of a Jekyll and Hyde their child may feel like, since they are also their child’s fiercest advocate. They are grappling with whether or not to medicate their child and perhaps desperately trying to find the right meds for their child. They may still be as sleep deprived as the new mom feels with a super young child, and they may not be sharing that fact. They are struggling to find peaceful moments for themselves, and their family and their marriage.

They are probably researching for how to solve or manage their child’s sleep, diet, or social challenges. They may be at their wits end trying to get a morning routine in place that works. They may be wracking their brains to come up with a homework strategy. They are probably explaining to their child’s school for the 100^th time that distracting fidgets are better than a distracting classmate. Or that whatever happened at school today was not on purpose, and not to take recess away; or perhaps trying to navigate the school system or documentation that may provide for their child’s allowances at school. They may be doing all of this without the support of their family or spouse.

Amidst all of this they are grateful that by some miracle there are clean clothes in the hamper (much less the drawer) and perhaps beating themselves up because its fast food for dinner again. They are grappling with the overall chaos that can be in their home with a non-neurotypical child – as well as the rest of that aforementioned “mental load”. And because all this seems so overwhelming, frustrating and numbingly mundane to them day-to-day, they are not sharing it with anyone... therefore they may also be super lonely.

They are also just as busy loving and supporting their wonderful gift of a child, cherishing and struggling to prioritize the important moments together.  All the while ever-grateful to the inclusive teachers, doctors, special education angels, other helpful parents and children, family members, occupational therapists, behaviorists, pharmacists, cashiers or general good samaritans who help them manage to get through each and every day- so they can do it all again tomorrow. You know who you are. You are the scaffolding that supports these amazingly strong Moms as they take each necessary step.

So if you are one of these Moms, my hope for you is that you share this with your support group so that they can understand your world just a tad better. (Even if what you specifically grapple with day to day is different than what's listed here, there is more in common than not).  Please know you are not alone and from the perspective of all the other Moms in the universe, YOU ARE A SUPERHERO.  Nothing short of an awe inspiring good citizen of the world, even on your most challenging day.  We are grateful for you.  If you know one of these moms, my hope that you find a way to give them a break or even just a simple loving moment to tell them just how amazing they are.


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Summertime...and the livin' ain't always easy....

I recently disclosed to my child’s awesome and real psychologist that I have put our kiddo in summer camps most of the summer. Sometimes our son says he wants to be home, but when he is home for more than a day and half – he goes stir crazy for the social and sensory stimuli….and then I start to go crazy and it is not a pleasant combination. And then, he doesn't want to be home.  (I am so very grateful to have the option of summer camps, as I know not everyone does.)

When he is not in school or camp, we plan lots of activities and there is not much time for chilling. I would love to be enough for him. I would love to be that family that cherishes every relaxed summer moment of sweet togetherness at home. But we are just not that family.  So instead he gets to go hunting for frogs (...and snips and snails and puppy dog tails?) and make rockets and stuff.  The doctor commended me for being mindful of what our family needs. He shared that some clients of kids like mine announce they are going to work on family/alone/ or one-on-one time over the summer, and he often cringes and thinks that can be a recipe for a disastrous summer.

All kiddos are different and some kiddos need intense intervention to modify certain behaviors that can affect their confidence/self image/ability to participate in mainstream programs, and often the best way to do this is at home. Some parents keep their kids at home during certain summers so they can implement positive behavior support programs aimed at supporting specific behaviors. Mainstream schools don't have the resources to do this effectively and mainstream camps don't know where to start with this sort of thing.  So some of us are at home over the summer, filling in the gaps that no one else can.

Now, I love George Gershwin as much as the many singers who sang his tune about Summer -- but the living' just ain't so easy for everyone.  If I’ve got this right, some parents of non-neurotypical kids may not be so... jumping-up-and-down. Or if we are, it may be less about joy and more about...desperately gasping for a moment to breathe.  Summer is when I really understand why they say moms of special needs kids can have their own special version of PTSD.

In a recent mom-friend conversation (her hands...plate...and well everything... is all full-up with a couple of these kids), She was telling me how she had a new doctor to support her own mental health. When she told the doctor that she was exhausted, the doctor replied ‘...of course you are’. When she shared she had anxiety and was perhaps depressed, the doctors said ‘of course’. What was was unexpected to me was that she was surprised by the doctor’s response. Her eyes welled up as we discussed the validation she’d received. I could see her letting go of guilt as we talked. In another mom conversation, she told me summer was a ‘hamster wheel’. I get it.

Sometimes it takes every little bit of sunshine you got in that dark pocket, and there isn't anything left for you.  If you are one of these parents I am here to tell you while you may feel isolated, overwhelmed, resentful and just plain kid-full-up this summer, you are not the only one who is experiencing it. 

We love our kid(s) like nothin’ else. And we work super hard to do our best to provide the support they need. But it isn’t always easy. In fact sometimes it is damn hard….sometimes during the summer it is damn harder.   It is okay to admit that - and not feel bad...maybe even let that guilt go and find yourself a long cool drink and toast to all the other parents like you out there. We are not whiners and complainers, we are realists who need support too. And, you dears are not alone. Here's to you!  Thanks for all you do to keep our all our kids moving forward.

To Med or not to Med....

We are those parents who belabor every decision of support for our child, we take our job of helping to optimize his life experience seriously (some might say we obsess). Perhaps it is in part because we tried for many years to have our son; he is the gift we so wanted and we want to do it "right".  In part, it is because we understand that if something appears like it is hard for him, it is even harder for him.  It is also, because my husband experienced similarities growing up and he wants to bestow all the advantages he can on his child. One of our most significant parenting decisions thus far has been to pursue the path of medicating our child to relieve some of his adhd, sensory and aspie challenges.

In particular, it was "The Fever Effect" that helped us to first discover it.  We noticed that he was pretty much neurotypically calm, present, focused and organized when he had a fever.  Over time we learned to recognize that our child was so wired all the time that he had a hard time focusing and relaxing enough to be present and enjoy everyday life.  We really wanted to help him.

We first launched on this path with our Naturopathic Pediatrician, who is an expert in kids with special needs. She is also a doctor and a biochemist, so her approach was combined science, experience and intuition based on our input.  She ran tests that told us our kiddo was DOUBLE in all the neurotransmitters that generate excitement (like adrenaline!) -- no wonder he couldn't go to sleep and then woke up like a piece of popping corn every morning...at 4 am!

We tried a number of homeopathic supplements in hopes of triggering his body to balance out its neurotransmitters naturally, with mixed results.  Each time we had a bit of success, we were very encouraged about what we saw in our child....and then discouraged when it didn't "stick" for him or work for long enough.  But suffice it to say, once we saw signs of the clouds clearing a bit...we wouldn't let go of finding a way to achieve that for him.

We eventually reached the point where his Doctor told us we needed to consider expanding to pharmaceutical drugs if we wanted to make further progress, or that we needed to accept where he was.  That was heavy news for us, as we had to overcome our discomfort with medicating him to move forward in helping him.   We were afraid; some of this is a land of great black unknown for parents.  Unknown effects, side effects, long term impacts, etc etc.  We decided quality of life right now matters, even as a kid.  Hindsight, I am so glad we went this route.  So are his teachers and classmates...and so is our kiddo.

While medication has eased things for our son, and smoothed things out for the onlookers in our life, under the surface it is not a simple path.  Kids are constantly changing and growing.  Once the right doses are found....they can just as easily change.  And when a does or medicine needs to be changed, titration over time is the methodology.  We'd learned that our kiddo was super dose sensitive.  So much so, that even time release options didn't work because of the ramp up and down in his body.  The trial and error process to find the right solution requires persistence, patience, empathy and love find the right medication and place.

Lessons learned along the way:
1.  Finding the dosage threshold:  Many of the meds the doctors wanted to use are not made for little ones.  The available doses can be high, depending on the kid.  We vowed never to drug our child to what we called 'zombie level'. We wanted to help our child be more of him, not disappear him.  It can happen, it is so important to listen to your parent instincts and communicate details to your doctor to get the appropriate dose.
2.  Customizing the pills:  Under a doctor's direction, doses can be completely customized.  We order empty capsules and use a pharmaceutical type scale to make our kiddo's pills weekly.  Not every child would require this level of detail.  Due to our child's dose sentivities, this is the only way we can stabilize him.
3.  Observations:  In order to determine if the dosage is right observations are critical.  For example,   My son is triggered by visual and sound stimuli.  So at times, he is pretty different in our quiet home than in the classroom.  Additionally, when he was young his ability to give us any specific verbal feedback was limited.  I also found the the feedback I got from teachers was not specific enough.  Fortunately, I was able to arrange to view my son in school at different times of the day and different activities to assess the changes in his meds.
4.   Finding the right medication:  Sometimes it takes more than one medication.  We've found that balancing more than one medication has been the right mix for our kiddo. Again, lots of patience to to titrate each change combination up or down over time.
5.  Practitioners:  Seems like we always balanced a couple to help us with this process. Between a developmental pediatrician and the aforementioned naturopath.  You need people who can be nimble and responsive to the changes you see in your child.  

Now that we are on the path, we constantly belabor when changes need to be made in his meds, and how to get it right.  It is a big responsibility and there are times when it is both vexing and sapping, especially when there is not a right answer.   That said, the relief it has provided our son has made it so very worth step.

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Swingin for joy!

Did you know we have more senses than what you may have learned in school?   Yup. THERE'S MORE than taste, smell, touch, see, and hear!   It's called proprioception, or our sixth sense. Most of us develop our sense of place in the world and our own body awareness as a part of our natural development.  But some kids need some extra help or support, particularly sensory kids, Aspie kids, or kids on the spectrum.

One way to offer that support is swinging.  Swinging can be organizing and relaxing for kids who are excited or seeking input.   Every occupational therapist room my son has ever been in has either had some sort of swing or swaying hammocks.  All of which he has loved.  In fact, he loved them so much that we've installed one in our home.  

I recently posted a video of our kiddo on his swing in a parents for sensory processing disorder Facebook group, and it got enough attention that I'm sharing details of how we installed it here as a blog post.  We did this in our old home and now in our new home we just moved to.  So it has been time and setting tested!  Here's how we did it:

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Materials:

Super/Channel Strut bars

3/8 strut spring nuts (should be on shelf next to struts)

3 inch x 3/8 width wood screw bolts

3/8 inch cut washers

socket wrench

Hack saw

white metal paint

high quality stud finder

drill with 1/4 in drill bit

ladder

2nd ladder tall step stool for assistant to hold strut as needed

4 inch x 3/8 diameter eye bolt-hooks

Swing!!

1.  You can find "Super Strut" or "Channel Strut" at Home Depot or Lowe's.  It comes in long pieces (usually 10 feet long), so you may need to cut it down; we used a hack saw.  It is the majorly strong main bar that holds everything, ours has always been 5+ feet to ensure strength.  There are 2 main varieties, the kind with a square cross-section and the kind with a flatter cross-section.  We used the flatter kind (less obtrusive but a LOT harder to install the spring nuts), but both would work fine.

2.  If you don't want metal rails on your ceiling you can paint your Super strut bars.  We got white Rustoleum spray paint and painted it on a tarp outside.

3.  Find your support beams.  The Super Strut needs to be bolted to support beams, preferably across ways - perpendicular - so it attaches to multiple beams for overall strength.  We've found that the inexpensive stud finders didn't work very reliably, and it was well worth it to invest in a high quality one to find the beams.   

4.  Each of our Super Strut is secured in 4 places.  You'll need a drill to prep holes just smaller than the width and for the full depth for the bolts (we used 1/4 inch drill bit for 3/8 inch bolts).  And a socket wrench to screw them in.  See attached Home Depot receipt for the 3 inch x 3/8 width wood screw bolts, along with 3/8 inch cut washers for each bolt to cover the large holes in the back of the Super Strut beam.  (You can also ask the Home Depot folks for help, as that is what we did the first time.)  My husband is an engineer and he feels really good about making this really secure so one of us can even swing with our kiddo.  (We've been known to do bedtime stories there!)  

5.  One Super Strut bar is enough for a swing.  But, if you install two super strut bars it will give you more flexibility for different types of swings or climbing apparatus.

6.  Once your Super Strut is up, then you need to install the Super Strut bolt holes, the "Spring Nut" pieces, 3/8 inch.  These are literally the holes for your bolt hooks.  You push them into the strut channel and turn them to lock them in place.  This is not easy, as they are very stiff and will require your patience.  :)

7. Then install the 4 inch x 3/8 diameter eye bolt-hooks into the spring nut bolt holes.  These bolt hooks will hold your swing (they are a little long so he is going to cut them down in length, but the next size down is too short).  See attached receipt and photo details for those.  

8.  One your bolts-hooks are installed into your super strut, you can hang your swing and deliver hours of joy to your sensory seeker.

The-Mommy-Voice Advantage

Despite what some family, doctors and teachers did - or did not tell us.... It was my Mommy Voice that propelled us forward on this journey and continues to do so today.  It is what I listen to on the days that hit me over the head with any number of things, among them -- lack of support in the system,  sleeplessness,  utter chaos, exasperation, or occasional feelings of hopelessness that this situation sometimes offers up.  And over time, I've honed the skill of using The Voice as my compass.

In my last post  I wrote about early intervention and our own preschool experience.  Once we figured out our son was not neuro-typical, here's how it all went down.  My son's next teacher (Montessori Pre-k) informed us he was that kid who was unable to focus on tasks and disruptive to others who were trying to do theirs. (Later, we learned he was triggered by large, loud, active rooms. Stimulated so much by them that the poor kid would run defensive laps around the room).  His teachers didn't have the skills to really help him, nor were they able to steer us with what to do next. 

Once we got the gist that our child was struggling because he was not neuro-typical -- and learned that some experts assert the optimal time for critical brain pathways to develop is thru age 7 -- pretty much all hell broke lose for me and my husband.  We felt desperate to help our child as quickly as we could.

First, I took the kiddo to his pediatrician, who literally told me he looked like a typical excited boy and that lots of boys start out that way.  Seriously.  Like it was in my head and I was an overly worried mom!!  That's when my loving, vigilant, primal inner Mommy Voice took rank forevermore.  (Since I'm the one writing this, I'm taking liberties calling it the Mommy Voice, but I've found that in our family,  Daddy's Inner Voice is also dependable).

So here I was taking on the Kaiser system...without any expertise in the subject.  My Mommy Voice politely and firmly replied to the pediatrician:  His teacher has been teaching this class for years, she is an expert in kids his age.   I trust her judgment in that he is not neuro-typical.  She can tell the difference.  I've seen him in his class and agree with her.  Please connect me with someone who can properly diagnose him.

Thankfully the pediatrician could see I wasn't going to take no for an answer, bowed to the Voice, and dispensed a referral to the single Developmental Pediatrician in the area network at that time.   Yes, that's right the ONE, with appointments only available months out.  It would still be months for our insurance network to diagnose and then open up the door for *partial* support and coverage.  By this time it was feeling like a battlefield on multiple fronts, without any weapons.  It was that Mommy Voice that became my General and told me to trek on without waiting months for our health insurance process to kick in:  Find a new, more inclusive place for kiddo to spend his days;  Try to get a diagnosis and some support for him as soon as possible.  But how? Where to start??

The community of those who parent kids with special needs is truly magnetic and grounding.  They are drawn to each other and go out of their way to help each other, because they get it.  They get how it feels to be so helpless about something so big and out of control - and that it may just be the hardest thing you'll ever face.  So even though they are in their own messy full life, I've found they are typically there for every step that you ask.  (Both friends online, and helpful groups online).  My best next step was to meet with this altruistic mom who imparted on me the best steps she took to help her own son.  Her tips provided me with the necessary guidance while I waited for that blasted doctor appointment.   Among her best:  Find a Pediatric Occupational Therapist (OT), for which a doctor's referral is not necessary.  Find a Naturopath/eastern medicine who is an expert in kids with challenges.  I did both and she was right  --  they warrant entirely separate blog posts. 

It was the Voice that navigated our journey - fed by my Trusty Tribe and the love of my son.  Goodness knows it wasn't expertise in anything.  My trusty inner Mommy Voice reminds me that when it comes to my family my instincts and heart are just as valid as what the expert tells me; but also to listen discerningly to the experts; that whatever-is-hitting-me-on-the-head... shall pass and remember to rise up; that it is my job to always advocate and do my best; that if it is hard for me, it harder for him; that I was meant to be served up these lessons and hone these skills (which undergo continuous improvement); and that my son makes me a better person.   And...so....I listen.

What does your Inner Voice tell you....Are you listening?

We can do better: Early Intervention

The last day of my son's first preschool year his teacher told me... Your son is doing better now.  I was not sure what she meant by that comment.  And it was delivered without any additional. information.  That was a VERY LAME and failed attempt at trying to say my son was...perhaps... not.... neurotypical.

Based on what I've seen and heard, many preschool teachers are not equipped or trained for this hard conversation. (In my case, it was his teacher's first preschool job).  Many preschools are afraid of  misdiagnosing or of being perceived as diagnosing, so they circumvent the business altogether.  At the same time some parents are often not prepared for this hard conversation (especially if it is their first child) and therefore don't want to hear it.  It can easily backfire on the preschool if not handled effectively.  So sadly, these poor kids get passed up for early detection and early intervention...far too often.

I'm no expert by any means.  But but as I understand it, these early years are the most formative for high functioning kids like mine to expedite improvements and 'training' for their neural pathways.  In other words the more support they get, and the earlier they get it...the more likely it will help them to develop 'tools' to address their challenges.  The good news is that there are early developmental and intervention support programs available, but a child has to fist be evaluated, diagnosed, and then enrolled into that system to be eligible for that support,  Presently, at least in Oregon, that is heavily reliant upon these difficult conversations and parental acknowledgements to happen.

We are one of the lucky families graced with that hard conversation early on, and grateful for it.  After that first year of preschool, we took our to son to a different Pre-k - and they recognized there was something different about him.  They didn't try to diagnose him and they were unable to steer us with what to do next.  We were left to figure it out on our own.....I'll save that story for the next post....

Meanwhile, I believe our community can do better. (I can hope!)  I envision a doable communications based program that would cast a net to catch these kids.  Perhaps other states do this already, but here's how I see it:   We give preschools the tools to conduct a basic standardized checklist or scored evaluation, with some minimal training. Not all that different in concept than the standardized reading or hearing tests.  We communicate to all parents there is a required evaluation to uncover if a child may potentially need some extra support or evaluations.  And, if muliple triggers are found -- they can opt to get their child further evaluated.   Standardized information could be provided to guide them to that next step and inform them of the benefits of early support.   This would create some basic awareness among all parents; some structure for the preschools to provide a critical service without diagnosing;  and initialize next steps to support these kids. 

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Get me to the school on time...

When teachers ask parents to do things, parents may not always know the reason why.  I was recently privy to a conversation between my son's teacher and another parent.  The teacher was asking the parent to try and get their child to school on time.  The parent basically didn't feel it was an appropriate inconvenience to rush their child to get to school. (I am trying to imagine that luxury, as it is such an effort to get my kid organized around getting to school each day....)

This particular class has a number of neuro-divergent kids (My child among them).   Many neuro-divergent kids work best when there is a routine schedule and minimal disruptions that can set them off track.  There is a domino-effect that happens, where kids can get disregulated, and then disregulate each other.   It can potentially upset the whole class for an activity or for the day.

Teachers may not always be able to explain the reason for a request they are making, particularly in front of their class.  This teacher feels it is best for the children and the ecosystem of the class to keep it going as smooth as possible by starting the day consistently.  And, as hard as it for us to do so since we drive across town, we do our best to honor that.  Boundless kudos to our teachers, who are the protectors of their often delicate ecosystem.  In my opinion, they should get all the support we can give them!